Some days the stories are adorable, some days they are horrific, but it is all just a part of our tale!

Tuesday, August 14, 2012

Enough Balance Already!

Good and evil. Light and dark. Night and day.Yin and Yang.

Balance. Balance in food and drink. Balance in exercise and leisure. Balance in work and play.We all live the balancing act every day. Heck I even research about the balancing act between work and family as well as work and chronic illness. The point here….I totally and completely understand the need for balance.But to be honest I’d like a little lessbalance in my life.Let me illustrate.

On August 9th we celebrated Ryley’s 12th birthday. I just can’t find the words to explain how each and every birthday that she celebrates simply takes my breath away.I guess hearing that your child will never live to see the age of 5 or watching your child code and having to explain to her later why her ribs are so sore from cpr kind of drives home how precious each and every minute is with your loved ones, particularly when they are your child. And so as much as it overwhelms me that my baby girl is now a pre-teen (and heaven help the person who mistakenly calls her a “child”), I also can’t begrudge the time because it is all time that I never expected to have. So to be completely honest with you birthdays are a BIG deal in our household.Call it overindulgence, spoiling, or whatever you want but I strive to make each and every birthday as special as possible. This year was no different and I think we did pretty good: a new skateboard (please let us start school without a cast or crutches unlike the last few years), an American Girl doll (thank you Grandma and Grandpa), and lots and lots of zebra printed stuff. If you know my family at all, you also know that August is cupcake month for us—it’s a long story that I’ll explain another day if you don’t know the story—this day was no different; we lived it up with S’mores cupcakes.Pure and simple fun, happiness, excitement, and togetherness just the way birthdays ought to be.

Then we took her to a friend’s house to stay the night not because she had asked, not because she had been invited, but because her dad, brother, and I had to be up early for a trip to Mayo on the 10th.Caden had to go under full anesthesia again(#6if you are keeping track—Ryley said it was because they always have to have at least the same number of anesthesias or more than their age---this is a trend I’d love to break one of these days) in order to have a mag3 renal scan with lasik. This was the test that was going to explain his abdominal pain and the abnormality the doctors discovered on an ultrasound a few months ago.

Morning, as always, came too early and we headed to Mayo.Doing what we always do because Caden couldn’t eat, we didn’t eat, because Caden had to drink a lot for the test, we drank a lot, and because Caden couldn’t use the restroom, we didn’t either. Elf, as always, entertained the waiting room although he did look a little worried in pre-op because the tables were pretty high and he wasn’t sure if or how he was supposed to get up there with his boy. The procedure took longer than expected and recovery was rough.I think part of the problem is that he just recently had anesthesia and in the past we’ve noticed the closer procedures are, the more effects he deals with.Insult to injury once his vitals stabilized and the vomiting stopped we had to pack him up and head to another building to wait over an hour for a doctor who was running late to get the test results. Before looking at the procedure results, the doctor informed us that Caden would probably need a few more tests that will require……full anesthesia. Not sure why the doctors aren’t coordinating efforts but we are working on that before we do this again. The easy answer is that the abnormality exists in Caden’s one kidney but it isn’t causing the pain and the other tests and another specialist will be necessary to figure out if and how to fix things.Heartbreak, frustration, and anger are just a few of the politer words that come to mind to explain how I felt leaving Mayo on Friday.

On the 12th we had an early birthday party for Caden at Chuck E Cheese. I know it sounds counterintuitive to have a birthday party for someone with autism and sensory issues there but honestly it works for us if we plan it right. Consequently, we had a party at 11am on a Sunday when the place was l-i-t-e-r-a-l-l-y empty!10 friends came, we avoided the large mouse and the dreaded [birthday] song, and the video games meant no child had to play together or interact if they didn’t want to.We came home and celebrated the successes of the party while planning our trip to Mayo for infectious disease/immunodeficiency appointments for both kids.In perspective these appointments weren’t all that dramatic although the infusion product both kids is being discontinuedand we need to do bloodwork again…..my definition of a low key appointment **may**be a bit skewed at this point in life.

On August 15th we will celebrate another cupcake day in our household—Caden’s 6thbirthday.From above you already know the drill—there will be presents and cupcakes preferably without icing, and chocolate chip muffins because those are Caden’s favorite.We’ll celebrate with presents in the morning—we’ll be happy, excited, together and having fun. Then we’ll take time out to go over to the hospital for Ryley to have an xray to see if the pain and shortness of breath she has been experiencing is a result of a bubble in her lung that will require close monitoring and perhaps intense treatment. Because xrays are never read quickly we’ll come back home and we’ll enjoy cupcakes and more happiness, excitement, togetherness, and fun and we’ll wait for the call that will tell us if we are headed back to the hospital. And If we escape that hospitalization, we will be back in the hospital to hang out for 10 or so hours on Saturday as both kids receive their infusions with the new infusion product.

So back to my original point, I understand we have to have rain to appreciate the sun and that without rain we wouldn’t have rainbows. I get why I have to take a multi-vitamin when I’m traveling and not eating as healthy as usual. I understand day and night, good and bad, yin and yang but honestly I am a little tired of life and death being so closely associated for my kids. Don’t get me wrong, I don’t feel sorry for us, but I do wish our lives could be just a little less balance. And on that note I’m off to bake chocolate chip mini muffins and funfetti cupcakes without icing.

About Me

I’m Jenn and this blog is about my family and our journey with "medical mystery alphabet soup." Our tale wouldn't be complete without our super autism service dog, Elf, our rescued fur babies, and whatever else life throws at us. Bio? Step? Adopted? Who needs more labels, we're just family around here. Some days our stories adorable, some days they are horrific, but it is all just a part of our tale.

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